What's Been Happening with Lipedema and Me?
I've hit a bump in the road, but I'm getting back on track.
I’ve been off the Substack platform for a little while, and I apologize for that. My husband’s Aunt Joanne was hospitalized at the beginning of the month and went on hospice, but her assisted living facility wouldn’t take her back, essentially making her homeless.
So, my husband and I took her into our home to care for her. It was 24/7 care, and it took all my energy to care for her needs. I was only able to get out of the house to go to physical therapy and only if another family member was able to sit with her (if you didn’t know already, I had a knee replacement in mid-October and have been participating in physical therapy twice per week).
Caring for our beloved Aunt Joanne was physically and emotionally exhausting, and it took a tag team of me and my husband to do the work. I had no room for anything else, including my writing.
When we first got Aunt Joanne home, she was choking on bites of food. She wasn’t able to drink water and was confused and incoherent. We were told she wouldn’t make it through the week.
However, this 92-year-old spitfire rallied. She perked up once she got to our home. She slowly recovered her ability to eat and drink. She became lucid and aware. After ten days of care, she returned to her usual self. We decided she was ready to go back to her assisted care home.
I’m a nurse case manager, and my day job is transitioning people from one entity of medical care to another. It took me three days to coordinate transitioning her from home to her facility with hospice in place. This is actually a standard amount of time, which is ridiculous. But getting all the cogs to work in the wheel takes a lot of time and energy.
Last Wednesday, we drove Aunt Joanne back to her facility.
The entire experience made me see again how difficult it is to accomplish anything in the medical industry. Orchestrating all the different aspects is tricky, and if one part is forgotten, the whole process can fall apart.
It’s similar to getting a diagnosis and medical treatment. Lipedema is only one of many conditions that take a lot of coordination. If you’ve ever had to manage a medical event for yourself or a loved one, you know how complicated it is to get anything done.
It takes a lot of patience and diligence to keep pushing through the red tape to get what you need to get treatment and stay healthy.
Getting any care for Lipedema is especially difficult for obvious reasons: little awareness of our condition and too few physicians and surgeons who specialize in Lipedema, which creates a bogged-down system for getting treatment. And the biggest one is us patients who have to put in our own preauthorization to insurance for surgery.
These reasons are why I started Lipedema and Me. I know how to coordinate care between medicine and insurance. I’ve been doing this kind of work for years. I never thought I’d do something like this, but when I found out I had Lipedema, I knew I needed to help other women like me. I’m a medical and insurance geek, and I thrive on getting wins for someone who needs help. If you want to know more about me, you can go to my About Page here!
Here’s the restart:
Before life interrupted me, my goal for November was to dive deep into getting a Lipedema diagnosis. I’m extending this to the end of the year because it’s an essential start for all of us to get treated for our Lipedema.
And getting diagnosed is not easy! However, I have several different strategies for getting Lipedema as a diagnosis, depending on where you are in your treatment. Along with this, there are other conditions that parallel Lipedema (such as Ehlers-Danlos Syndrome, or EDS). I’ll show you how to use these conditions to help you get diagnosed with Lipedema.
I have been offering and continue to provide a complimentary session for those of you who want a 1:1 session with me. If you join the Lipedema and Me community with the annual fee, you will get this complimentary offer via email. Once you’ve subscribed, you’ll get a link to my appointment calendar. This offer is a 25-minute phone call to answer any questions to help you get unstuck in pursuing your Lipedema treatment.
If you aren’t ready yet, that’s okay! Through these posts, you can continue to be part of the Lipedema and Me community by signing up for the free Lipedema and Me subscription.
If you have ANY questions, feel free to comment below. And thank you for your gracious patience. I appreciate all of you!
Take care,
Michelle